scholarly journals An Editorial on Tailoring Patient-Reported Outcomes to the Individual Patient: Precision PROs

2020 ◽  
Author(s):  
Salene Jones ◽  
Scott D. Ramsey ◽  
Joseph M. Unger
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Item Bank ◽  
Future Research ◽  
Minimally Important Difference ◽  
Psychometric Methods ◽  
Patient Reported ◽  
The Individual

Patient-reported outcomes (PROs) have the potential to improve clinical care. One barrier to implementing PROs and maximizing their effectiveness is difficulty individualizing PROs. To address this barrier, we propose a precision PRO methodology. By this approach, patients would first define a minimally important difference for themselves. Patients would then choose which items within a PRO item bank are most important to them; these items would be used to monitor patients’ progress. Patients could be compared to each other – even if they chose different questions – using modern psychometric methods. We propose future research to guide how to determine the simplest and most effective precision PRO methodology.

scholarly journals Quality of life measures in older adults after traumatic brain injury: a systematic review

2019 ◽  
Vol 28 (12) ◽  
pp. 3137-3151 ◽  
Author(s):  
Cindy Hunt ◽  
Shatabdy Zahid ◽  
Naomi Ennis ◽  
Alicja Michalak ◽  
Cheryl Masanic ◽  
...  
Keyword(s):  
Systematic Review ◽  
Older Adults ◽  
Injury Severity ◽  
Clinical Care ◽  
Future Research ◽  
Rigorous Research ◽  
Patient Reported ◽  
Study Population ◽  
Hospital Stays ◽  
The Individual

Abstract Background On average older adults experiencing TBI are hospitalized four times as often, have longer hospital stays, and experience slower recovery trajectories and worse functional outcomes compared to younger populations with the same injury severity. A standard measure of Qol for older adults with TBI would facilitate accurate and reliable data across the individual patient care continuum and across clinical care settings, as well as support more rigorous research studies of metadata. Purpose The aim of this systematic review was to investigate patient reported Qol measures in studies with older adults post TBI. Method A systematic review was carried out focusing on the various tools to measure Qol in older adults, ≥ 65 years of age with a diagnosis of TBI. Data bases searched included Medline, Embase, PubMed, CINAHL, and PsychInfo from date of inception to September 25, 2017. Results A total of 20 articles met the inclusion criteria. Nine different tools were identified. Conclusions Findings based on the comparison of reliability and construct validity of the Qol measures reported in this review suggest that no single instrument is superior to all others for our study population. Future research in this field should include the enrollment of larger study samples of older adults. Without these future efforts, the ability to detect an optimal Qol measure will be hindered.

Prevalence of symptom clusters among sarcoma patients in active treatment.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e22561-e22561
Author(s):  
Vanessa C. Copeland ◽  
Jennifer Phun ◽  
Eve M. Segal ◽  
Kathryn J. Hammer ◽  
Elizabeth T. Loggers
Keyword(s):  
Active Treatment ◽  
Patient Reported Outcomes ◽  
Chart Review ◽  
Additional Data ◽  
Clinical Care ◽  
Retrospective Chart Review ◽  
Symptom Clusters ◽  
Future Research ◽  
Specific Data ◽  
Patient Reported

e22561 Background: Cancer patients (pt) frequently experience symptoms from cancer or its treatment. Two or three co-occurring, uncontrolled symptoms (symptom clusters, SC), can worsen cancer pt morbidity and mortality. Although SC have been characterized in other cancer pts, little research has been conducted in sarcoma pts. Methods: SC were studied via retrospective chart review of adult sarcoma pts receiving treatment between 09/2018-01/2019 in a dedicated sarcoma clinic. Pts completed a 33-item, modified Patient Reported Outcomes-Common Terminology Criteria for Adverse Events (mPRO-CTCAE)-based review of systems (hereafter “form”) for ongoing clinical care with presence of individual symptoms defined as ≥“occasionally.” Demographic, disease and treatment specific data was collected; descriptive data (%’s) are presented. Results: Pts (n = 153 completing 321 forms) were median 57 years (range 20-81), 48% male, 68% white, with lower extremity (29%) or abdomen (46%) sarcoma with 67% receiving IV chemo (33% oral chemo), with the majority at full dose (77%). Most had leiomyosarcoma 18%, liposarcoma 14%, GIST 12%, or NOS 24% with 59% metastatic disease. Five SC triads occurring in > 25% of pts who fully completed one form were identified (see Table). Eighty-one pts completed 2 or more forms (mean 26.7 days from first to second form [std dev 17.7, range 2-77]) with 50-67% of evaluable pts having ongoing SC triads. Conclusions: Symptom clusters are common among sarcoma patients on active treatment. Future research should address optimal management of these clusters. Additional data, including severity/interference of symptoms, longitudinal changes and predictors of SC, will be presented.[Table: see text]

Minimally Important Difference in the Foot and Ankle Outcome Score Among Patients Undergoing Hallux Valgus Surgery

2019 ◽  
Vol 40 (6) ◽  
pp. 694-701 ◽  
Author(s):  
Sameer Desai ◽  
Alexander C. Peterson ◽  
Kevin Wing ◽  
Alastair Younger ◽  
Trafford Crump ◽  
...  
Keyword(s):  
Activities Of Daily Living ◽  
Hallux Valgus ◽  
Daily Living ◽  
Patient Reported Outcomes ◽  
Minimally Important Difference ◽  
Foot And Ankle ◽  
Outcome Score ◽  
Patient Reported ◽  
Bunion Correction ◽  
Correction Surgery

Background: Patient-reported outcomes are increasingly used as measures of effectiveness of interventions. To make the tools more useful, therapeutic thresholds known as minimally important differences have been developed. The objective of this study was to calculate minimally important differences for the domains of the Foot and Ankle Outcome Score for hallux valgus surgery. Methods: The study was based on a retrospective analysis of patients newly scheduled for bunion correction surgery and completing patient-reported outcomes between October 2013 and January 2018. This study used anchor- and distribution-based approaches to calculate the minimally important difference for the instrument’s 5 domains. Confidence intervals were calculated for each approach. There were 91 participants included in the study. Results: Using anchor- and distribution-based approaches, the minimally important difference for the pain domain ranged from 5.8 to 10.2, from 0.3 to 6.9 for the symptoms domain, 8.3 to 10.3 for the activities of daily living domain, 7.4 to 11.1 for the quality of life domain, and from 7.0 to 15.7 for the sports and recreation domain. Small differences in the activities of daily living domain may be more clinically important for patients with better function. Discussion: The range of minimally important difference values for each domain indicate how the Foot and Ankle Outcome Score corresponded to bunion correction surgery. The sports and recreation domain showed considerable variability in the range of values and may be associated with the domain’s lack of responsiveness. Overall, most minimally important difference values for the domains of FAOS ranged from above 4 to below 16. Level of Evidence: Level III, retrospective comparative series.

scholarly journals Patient-reported outcomes in obsessive-compulsive disorder

2014 ◽  
Vol 16 (2) ◽  
pp. 239-254 ◽  
Keyword(s):  
Obsessive Compulsive Disorder ◽  
Patient Reported Outcomes ◽  
Functional Disability ◽  
Psychometric Evaluation ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Future Research ◽  
Obsessive Compulsive ◽  
Compulsive Disorder ◽  
Patient Reported

The purpose of the article was to provide an overview of patient-reported outcomes (PROs) and related measures that have been examined in the context of obsessive-compulsive disorder (OCD). The current review focused on patient-reported outcome measures (PROMs) that evaluated three broad outcome domains: functioning, health-related quality of life (HRQoL), and OCD-related symptoms. The present review ultimately included a total of 155 unique articles and 22 PROMs. An examination of the PROs revealed that OCD patients tend to suffer from significant functional disability, and report lower HRQoL than controls. OCD patients report greater symptom severity than patients with other mental disorders and evidence indicates that PROMs are sensitive to change and may be even better than clinician-rated measures at predicting treatment outcomes. Nonetheless, it should be noted that the measures reviewed lacked patient input in their development. Future research on PROMs must involve patient perspectives and include rigorous psychometric evaluation of these measures.

The Use of Patient-reported Outcomes at an Individual Level – Benefits and Challenges

2010 ◽  
Vol 06 (01) ◽  
pp. 19
Author(s):  
Agnes Czimbalmos ◽  
Andrew Bottomley ◽  
◽  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Healthcare Services ◽  
Individual Level ◽  
Patient Health Status ◽  
Hrqol Data ◽  
Patient Reported ◽  
Patient Health ◽  
Related Quality ◽  
Health Related

The aim of this article is to review the application of patient-reported outcomes (PROs) in clinical care and consider its benefits, challenges and potential improvements. Previous studies demonstrated that health-related quality of life (HRQoL) data provide information to clinicians on patient health status, QoL, symptoms and wellbeing, along with any changes in these, and helps clinicians judge the needs of patients and tailor treatments accordingly. In addition, the benefits of the application of HRQoL tools include the involvement of patients in informed decision-making in terms of their treatment or care, higher patient satisfaction with healthcare services, improved patient–clinician relationships and better communication. In many studies, health professionals have expressed their interest in using these measures but feel they need to better understand them. Despite the wide use of information-gathering questionnaires and their promising results, it is still a challenge to predict the full value of these measures in clinical care. This article addresses these major concerns.

Untangling a web of Electronic Patient Reported Outcomes data to support quality improvement.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 311-311
Author(s):  
Meggan Davis ◽  
Erik Winters ◽  
Lisa Acomb ◽  
Matt Palmgren ◽  
Kerry K McMillen ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Program Improvement ◽  
Project Team ◽  
Distress Screening ◽  
Response Distribution ◽  
Data Infrastructure ◽  
Patient Reported ◽  
Volume Response ◽  
Data Tables

311 Background: Adoption of Electronic Patient Reported Outcomes (ePROs) as part of clinical care is aided by the ability to respond to feedback and develop solutions founded on data. This requires access to usage, volume, response, and system performance data, yet with limited resources the infrastructure needed to store and analyze these data is often an afterthought. The Seattle Caner Care Alliance followed an iterative process to create dashboards featuring content-specific metrics while improving the underlying infrastructure of patient-generated data collected via the ePRO program. Methods: For each dashboard, the project team followed 7 steps: 1) Clarify the purpose. 2) Brainstorm requirements with content-specific stakeholders. 3) Create initial drafts for review, testing, and validation. 4) Validate that metrics are clear and provide value. 5) Update dashboards and review with stakeholders. 6) Perform technical clean-up and improvement to data infrastructure. 7) Iterate until all stakeholders approve. Results: 27 data tables were linked to create four content-specific dashboards: Overall Key Performance Indicators (KPI), an experimental dashboard, and responses to chemotherapy symptom and distress screening surveys. The KPI dashboard featured completion rate, adoption rate, survey and intervention volumes with the ability to filter by ePRO type, diagnosis, and intervention. The experimental dashboard allowed the project team to test data points, visualizations and methodologies before creating dashboards or updating data structures. Chemotherapy symptom and distress screening dashboards displayed interventions by symptom or concern, severity, referrals, and response distribution. Conclusions: Data collected via an ePRO program offers an opportunity for improvement during implementation and ongoing program development. An iterative approach to analyzing these data and creating dashboards that engaged stakeholders and focused on data quality was an effective way to untangle a complex web of patient-generated data and to support program improvement. Future ePRO implementation would benefit from the inclusion of a flexible data development approach as part of planning and design.

scholarly journals Patient-reported outcomes in clinical practice

Hematology ◽  
2015 ◽  
Vol 2015 (1) ◽  
pp. 501-506 ◽  
Author(s):  
Sarah Dobrozsi ◽  
Julie Panepinto
Keyword(s):  
Clinical Practice ◽  
Patient Outcomes ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Physician Communication ◽  
Valuable Data ◽  
Patient Reported ◽  
Improve Patient

Abstract Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient–physician communication, and the quality of care for hematology/oncology patients.

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